Living with bvFTD

The psychological, social, family and financial issues that affect individuals with frontotemporal dementia are drastically different from those that affect individuals with Alzheimer's type dementia. When dementia occurs earlier in life, issues such as working, teenage children and financial stress are different from the issues dealt with by individuals who are older and most likely retired. Planning for the family's financial security and for the education of children becomes a difficult prospect when an individual is faced with a dementing illness in the prime of his/her working career. The nature of the symptoms themselves are often embarrassing to family members and there may be loss of friends and other sources of social support. Finally, most adult day programs and residential care facilities are not equipped to address the special needs of the younger patient, especially if the behavioral symptoms are difficult to manage. As more is known about the disease, more policy changes may come into effect. Some residential care and adult day programs are recognizing the needs of the younger dementia patient and are beginning to offer services to meet their needs. Before making any decisions, it is best to investigate your options.

Depending on severity, a patient with impaired comportment may not be able to manage their daily activities without supervision. They may be at risk for harming themselves or being victimized because they would not be able to recognize their limitations or use proper judgement. Driving is usually unsafe for persons with this diagnosis.

Fortunately, there are steps that can be taken to provide a secure environment for the diagnosed person and obtain help for family:

Obtain a psychiatric evaluation from an individual with experience treating people with dementia. Certain medications can help with behavior problems such as agitation and hostility.

Share information with family and friends. This will help them better understand the patient's behavior and provide an opportunity for them to offer the diagnosed persona and their family some support and respite.

Encourage the person to attend an early stage support group. Even if the support group is geared toward the person with early Alzheimer's disease, much information will also be relevant to Frontal Lobe Dementia.

Meet with an attorney or financial consultant. Make sure Durable Power of Attorney forms have been completed for both health care and finances. Give copies to your doctor. An "elderlaw" attorney who is well-versed in these issues is still an appropriate choice to help you draft these documents or you may obtain the forms at many stationary stores and complete them on your own.

Attend a caregiver support group. Listening to others who are going through similar experiences can be very comforting. They may also aid you in developing new caregiver techniques and learn about different resources within your community.

Try to remain physically and mentally healthy. Be sure to get regular health check-ups for both the diagnosed person and family. Exercise and eat nutritious meals. Build in time for things that allow you to rejuvenate.

Obtain a driving evaluation: Contact your local Alzheimer's Association for the driving evaluation program near you.